Old 04-16-2018, 03:39 PM #1 (permalink)
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Default New to the Forum

Hi, Folks. My name is Bill; I'm a new PALS, diagnosed in October, 2017, and also new to the forum. As I looked at some of the threads, I was impressed by the courage and compassion of the members here and wanted to introduce myself to the group.

My experience started with foot drop in the Spring of 2017, followed by ortho and neuro consults, EMG and nerve conduction studies, and the ALS diagnosis. I feel fortunate that I was diagnosed relatively quickly compared to what some others have had to go through.

I am using AFOs to help with the foot drop, and have found that hiking poles help when walking around the neighborhood, both with balance and by taking some strain off my legs. I can still do stairs, slowly, but can't carry much of anything up them.

I started Radicava infusions in early December and have been through five cycles, with minimal/no side effects. I am very grateful that my wife, who is my CALS, is able to administer the infusions at home which greatly reduces the time and effort required.

I identified with some recent posts from people who still question the diagnosis, even though they are far enough along with the disease to know it is ALS. I think in a way my mind is trying to protect me from all the harsh reality. As they say, "Denial is not just a river in Egypt." I don't look forward to the unpleasant later stages, but as I mentioned, I'm inspired by the courage of the folks here.

Best to all,
Bill
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Old 04-16-2018, 04:13 PM #2 (permalink)
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Default Re: New to the Forum

Welcome, Bill.

Sorry to see you here for any reason, but a very warm welcome nonetheless. You will find this forum filled with information and shared experience- and also a great deal of support. The people here know what you are going through and can definitely empathize.

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Old 04-16-2018, 04:53 PM #3 (permalink)
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Default Re: New to the Forum

Bill, I am very sorry to have to welcome you here, but welcome nonetheless.

I am glad you have taken the first step in joining this little community more fully. I have found it to be a wonderful place of support and advice.

And, I sure understand what you are saying about denial.

Steve
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Old 04-16-2018, 05:08 PM #4 (permalink)
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Hi Bill,

I'm so glad you found us early on. The people and moderators on this forum are great. Please don't hesitate to ask any question. This forum is very active and you'll have lots of support.
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Old 04-17-2018, 12:09 AM #5 (permalink)
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Hi Bill and welcome to the foot drop club. I wish you slow progression and more time on your feet.
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Old 04-17-2018, 02:04 AM #6 (permalink)
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Welcome Bill, so glad you have made your first post so we can get to know you. Terribly sorry you are here with us, but it's the best place to be if that's where you have to be!
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Old 04-17-2018, 09:32 AM #7 (permalink)
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Bill, thank you for sharing your descriptive "journey" (as we used to call it) that brought you here. Unfortunately... welcome.
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Old 04-17-2018, 10:53 AM #8 (permalink)
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Bill,

Welcome! Sorry you find yourself with so many others! DX is sad, but knowledge is the answer. Hope your advance is slow & easy!
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Old Yesterday, 07:11 AM #9 (permalink)
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Hey bill, thanks for the intro and letting us git to know ya some.

This forum is a valuable resource in learning about the nightmare.

No question is dumb only the one not asked.

Wishing ya slow progression, and all the mobility ya can muster,welcome
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Old Today, 08:06 PM #10 (permalink)
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hi Bill
Welcome to the forum.
Wendy
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